Genetic Bill of Rights
It was a decade in the making, but the U.S. Senate has passed a federal standard that protects people who learn through genetic testing that they might be susceptible to a serious disease from losing their jobs or being denied health insurance.
The bill, passed unanimously on a 95 to 0 vote, goes to the House of Representatives for consideration. President Bush supports the legislation and is expected to sign it into law.
The Genetic Information Nondiscrimination Act, called GINA, protects the privacy of personal genetic information so people who are tested can be assured that the results cannot be used against them.
The legislation bars access to such information by insurance companies making health-coverage decisions, and by employers making hiring decisions.
"For the first time we act to prevent discrimination before it has taken firm hold, and that's why this legislation is unique and groundbreaking," said Olympia Snowe, the Republican senator from Maine who sponsored the act.
She said the hundreds of genetic tests available today are "absolutely useless" if people are too afraid of taking them because they will be denied insurance or jobs.
Edward Kennedy, the Massachusetts Democrat who co-sponsored the bill along with Snow and Wyoming Republican Mike Enzi, said the bill "opens a new frontier in medicine in which we read the genetic makeup of patients to stop diseases before they even happen."
Hailing the measure as the "first civil rights bill of the new century in life sciences," he said its passage "means that people whose genetic profiles put them at risk of cancer and other serious conditions can get tested and seek treatment without fear of losing their privacy, their jobs, and their health insurance."
Snowe said that her interest in the subject stemmed from a 1997 letter from a constituent, Bonnie Lee Tucker, who wrote that she feared having a breast-cancer gene test even though nine women in her immediate family had been diagnosed with breast cancer, and she herself is a survivor.
She worried that the results of the test would prevent her daughter from getting health insurance. That wouldn't happen with the new legislation, Snowe said, who noted that "up until now, our laws have not kept pace with emerging technology."
Some business groups have warned that the bill could spark a flood of lawsuits, and Tom Coburn, the Republican senator from Oklahoma, worked to hammer out compromise language that made it harder for claims to be brought against employers perceived as discriminating. Coburn said he supported the bill.
Although about 40 states have passed their own legislation protecting genetic information, Congress has struggled for a decade to pass legislation. Lawmakers got a push toward setting a federal standard when the 2003 mapping of the human genome was unveiled. But, even so, it took Congress five years to act.
The legislation twice unanimously passed the Senate—once in October 2003 and again in February 2005—but same version did not pass the House. Snowe said this time she expected it would be passed by unanimous consent in the House and be sent to the president to be signed into law.






